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This Play Puts Alzheimer’s Caregivers in the Spotlight

The heart-rending off-Broadway production 'Dot' sparks tears and hope for change

By Deborah Quilter

If you have ever cared for an older person with dementia or Alzheimer’s, a new play by Coleman Domingo (who's also an actor and director) running through March 23 at  Manhattan’s Vineyard Theatre will likely touch a nerve. Though Dot focuses on a middle-class black family from West Philadelphia, audience members who stayed for a discussion about caregiving after the performance I attended found the message of this comedy-drama universal.

Shelly, sympathetically portrayed by Sharon Washington, is the put-upon daughter who performs the lion’s share of her mother Dotty’s care. Shelly, who also has a 9-year-old son, is already at the boiling point when the play opens. If we could see her blood pressure, it would be through the roof.

Shelly is tired of repeating answers to her mom's questions she just answered minutes ago and exhausted from being her mother’s major caregiver despite having a brother and a sister who could help. Shelly’s completely understandable anger spews out into the kitchen, where she is trying to get her mother to eat some breakfast while entertaining a family friend, Jackie, the oh-so-nuanced Finnerty Steeves. Jackie looks on mystified as Shelly screams that she just told her mother what time it was, and no, Dotty (veteran actor Marjorie Johnson) is not going out to the grocery store alone, all while banging pots and pans and slamming cabinet doors so hard you think they’ll fly off their hinges.

Watching and Worrying

When Dot retreats to the bathroom, Shelly fills Jackie in. “It’s Alzheimer’s. It’s a bitch,” she says. “The cops pulled her over because she was going 95 miles per hour. They asked her why she was driving so fast and she said the wind felt good on her.” The police also asked Dot where she was going, but she didn’t know. They found Shelly’s number on her mother’s cell phone. “That’s how I found out,” Shelly recalled.

Marjorie Johnson in DOT
Marjorie Johnson plays the title character in Dot.  |  Credit: Photo by Carol Rosegg

 

Shelly can’t leave her mother alone in the house, so she takes her to work. On top of everything else, Shelly worries that Dot will commit suicide. After hearing her diagnosis, Dotty declared she didn’t want to be a burden to anyone.
The toll of constant caregiving has profoundly impacted Shelly. “Girl, this just isn’t me,” she muses to Jackie at one point. “I’m fun.”

Maybe Shelly used to be fun, but not these days. Day in, day out, she must now oversee myriad tasks: get her easily distracted mother to sign legal papers, take her medication and eat. Nonstop monitoring consumes all of Shelly’s energy and fun is the last thing on her mind.

The only break Shelly gets is when Fidel (Michael Rosen), a political refugee from Kazakhstan, comes a few times a week to help out. Dot needed full-time care yesterday, but there’s no money for that. Shelly is doing the best she can — and sometimes that means giving her mother sleeping medications during the day and pouring herself a watermelon vodka at 10 o’clock in the morning.

Family Matters

At the beginning of Act Two, we find Dotty sitting on the couch with Fidel. “I lose everything,” she confides in a rare moment of lucidity. “I forget appointments. I can’t remember people’s names. I have trouble finding the right words to say. I’m scared.” Fidel looks on and listens compassionately.

Later, as the children bicker about how to care for their mother, Fidel weeps softly on the phone to someone at home, speaking in his native tongue. We know something is very upsetting to him, but don’t know what. Fidel doesn’t let the problem show as he pulls himself together to serve coffee to the family.

Michael Rosen and Marjorie Johnson in DOT
Michael Rosen plays Fidel, Dotty's paid caregiver, in Dot.  |  Credit: Photo by Carol Rosegg

 

While Dotty is finding a present, Shelly tries to enlist the assistance of her brother and sister. When Donnie (Stephen Conrad Moore) dismisses her fears, saying that Dotty’s disease is just beginning, Shelly roars back that that stage has passed long ago. She sees her mother’s decline clearly because, unlike her siblings, she is there most of the time.

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“Her disease is crashing all around us,” Shelly cries. Tension builds, fights erupt — until the lights on the Christmas tree itself swirl madly, threatening to topple it.

At the play’s end, as the family gathers at the foot of the staircase, awaiting the entrance of her grandchild, Dotty stands alone. Forgotten amid the chaos and celebration, she gazes at the audience from her own inner world of who knows what.

The 'Panini' Effect

After the performance I saw, a panel discussion including actors Sharon Washington and Michael Rosen, moderated by feminist/activist Jamia Wilson and Sarita Gupta, co-director of Caring Across Generations, elicited thoughtful responses from audience members, many of whom were caregivers.

Gupta referred to boomer caregivers as the “Panini Generation” because they are squeezed by having both young children and older parents to care for. Though it may feel lonely and personal to those going through it, Gupta sees caregiving as a shared, societal issue. But that doesn't make things easy.

One attendee testified from first-hand experience. “You have people in the family who can’t handle what’s going on,” she said, her voice breaking through tears. “Too many times there’s no conversation, and things fall apart.”

The hardships and precarious lives of paid caregivers — many of whom are immigrants — were also addressed. Michael Rosen, who played Fidel with spot-on sensitivity, talked about the influence Jin, his grandparents’ caregiver, had in creating his performance. Everyone raved about Jin, who knew how to handle his mother perfectly and did everything right. On closer inspection, however, it turned out there was quite a cost to her.

“Jin hadn’t been home to Thailand in 15 years,” Rosen reported. (His character, Fidel, hadn’t been home in nine.) “She had two grown children and was working from check to check, sending her earnings home.”

Rosen hopes that maybe the play will make people notice the Jins and Fidels of the world and give them some attention.

These outside caregivers — who do important work, as anyone who as ever relied on them knows — are often poorly paid. One woman in the back of the house identified herself as an immigrant caregiver. She was 62. “I am Fidel. I see what’s happening to American families,” she said.

This spurred Gupta to ask who would look after our aging caregivers?

It’s a good question.

Deborah Quilter is an ergonomics expert, a certified Feldenkrais practitioner, a yoga therapist and the founder of the Balance Project at the Martha Stewart Center for Living at Mount Sinai Hospital in New York. She is also the author of Repetitive Strain Injury: A Computer User's Guide and The Repetitive Strain Injury Recovery Book. Read More
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